In home care

[JOSIEM02]

My question is how do you know when it is time to have someone come in during the day with your PAL? My husband works abut 2 and a half hours away from home, I work 1 hour away from home, my sister in law works about 15 minutes from our house. Lately I don't feel comfortable leaving and having my mother in law home allday by herself. She has Bulbar onset, she can no longer speak, she has a PEG, colostomy bag, hands are very weak, legs are a little weak. Today she called her daughter with her dyno and told her feeding machine reset itself, everything had 0's. Between my husband, sister in law and the pump company they got it working. It's all I think about at work. When is it time for help?

 

[AlleyTurner]

Everyone is different. i have been living with ALS ten years now bed bound and can not move at all. I have my and comfortable by myself while my husband works 4 hours / 5 days a week or doing lawn work, shopping i even send him off to fish more quiet in the early morns while I still enjoy sleeping ! i am set up in bed to watch TV or go on computer and have voice activated phone. If I need he can be home in five minutes or if I am not feeling well he stays home . When I go on vent they say I will need 24/7 care. He will retired April first. But we can not afford home health care. Praying for the best.

 

[tdamess]

this is so sad i wish i could help we are so far apart

 

[joelc]

You say you are uncomfortable leaving her so that should tell you it is time. I don't think anytime is too soon.

Welcome Alley, it is good to see you posting!

 

[JOSIEM02]

Alley you are so brave. You are very lucky to have your husband with you and so close. Tdamess, you are so kind, thank you. Joel, as I was typing this thread I thought the same thing you said. Thank you all. How do I bring this up to my MIL, husband and sister in law?

 

[joelc]

How do I bring this up to my MIL, husband and sister in law?

I would tell them that you think it is time and you are concerned about her safety. That it would be more comfortable for everyone if there was another caregiver to help out.

I know it can be a touchy topic but persevere and let them know how you are feeling about this.